Just want to give a brief update on my progress. Mostly I’d like to complain a whole lot about how unbelievably difficult this ordeal has been. Weeks 5-6 were some of my worst, mostly having to do with my inability to cope emotionally with week after week of pain and horrible sleep. Lots of losing my shit out of the blue and being reduced to racking sobs. This was surprising because I tend to think of myself as a strong person. Funny what weeks of this can do to a person.

Around the beginning of week 7, I started trying to reduce my Vaseline usage. The first few tries were just unbearable, and I had to use it again. But I kept trying, and right now I’m on day 3 of no Vaseline. All I’m using on my skin is the daily Epsom salt bath. My skin is like a dead snake, just scale after scale after scale. You would think underneath all of these scales would be fresh, beautiful skin, but instead there are just more scales, or blood. My skin is pulled across my face like a drum. It’s ridiculous. But I’m trying to manage. I read around a bunch and just decided to give it a try. If it actually does lessen the time I’m suffering, then I’m all for it.

I’m not sure if others have experienced this, but in the past week I’ve lost two long-standing moles. One was a seborrheic keratosis mole and the other was a cherry angioma mole. They just dried up and peeled off. I’m amazed.

To deal with the extreme dryness on my hands, I’ve been using white cotton gloves spritzed with water. This helps so much. My skin stays reasonably soft throughout the day.

I’m not really sure what else to say. This whole thing sucks and I can’t wait for it to be behind me. I’ve never wanted time to pass so quickly. I am feeling better, but that is so relative that I almost hesitate to say it. Here are some pictures I just took:

My poor crusty hand.

The glove treatment.

My poor crusty face. I better look like a 30-year-old when this is all finished.

I just finished my fifth week. Weeks 3 and 4 were the worst I’ve had so far: many horrible days of white-knuckling through the pain, oozing, and lack of sleep. Looking back, I’m not sure how I got through it and I really hope it never gets that bad again. One thing I think TSWers should do is ask their doctors for vicodin. I just did and I can’t believe it took me so long to think of that. There just comes a point where the pain and suffering feel overwhelming and cause their own problem of soreness and exhaustion. Here’s to hoping a good painkiller will make those “surging” days a little more bearable in the next month.

Otherwise, I’m still using the Domeboro, Epsom salt baths, Vaseline, and hydroxyzine (antihistamine). I’ve been able to rely a little less on the ice this week, which feels like progress. My skin is still weeping in spots (inside of elbows, neck, chest, and eyes), though there are less of them and they are weeping less intensely. The swelling has gone down by about 50%. Overall my skin feels and looks like red sandpaper. It’s extremely hard not to scratch the itch, even when I know all the reasons I shouldn’t. It’s a constant battle.

I went out for a ten-minute walk yesterday at noon, with a hat, sunglasses, and covering clothing. It felt good to move my body and be outside. I think on my good days I need to make sure I do some basic stretching because I feel so sore and stiff all over. I’ve noticed that because of the pain, I try to find a comfortable position and then hold it as long as possible. So when I’m sitting on the couch, for example, I don’t move. It keeps me comfortable, but then later I feel broken as a result.

The other thing I’ve been trying to do is take my mind elsewhere. That can be sooooo hard when you’re burning, oozing, and itching! A few times it’s been so painful that I’ve taken some sleeping pills and slept off the worst hours. I’ve watched a lot of movies and listened to a couple of audiobooks. I’ve been trying to practice a basic form of meditation (just focusing on my breath) to calm down and keep from scratching, but I feel like I haven’t been very successful at all with that. Must keep trying.

This week was all over the map, two steps forward, one step back, and all those other mixed metaphors. I can see the healing, but it once again felt non-linear from one day to the next. So while things are improving, I’m still having:

Very bad sleep

Weepy, gross ooze

Fiery skin

Red rashy bumps

Nerve stinging on the back of my hand that keeps me awake some nights

Dry flaking skin

This ordeal is kind of kicking my butt, I must admit. At first I was all peppy and like, no problem. Now I’m like, okay, wow, this is ridiculous, and it might go on for a while. Oy!

The bright spot in this week was one night of good sleep and discovering Domeboro. Wow. You should all run out and by some. Basically, it’s an astringent and it really dries out the weepiness and little blisters. I’ve been soaking a washcloth in it and then using it as a compress for fifteen minutes twice a day on my chest and neck.

I meant to post a week 1 update, but alas, I was too busy packing ice onto my burning flesh. All I can say about the first week is: pure misery. Here are some highlights:

Absolutely no sleep

Gunk coming out of my eyes like crazy

A clear goo oozing out of the rest of me

Burning, burning, and, oh, more burning

Here’s how I looked at the end of week 1:

Not pretty. But better than the first few days.

Foolishly, I thought I would be above average in this whole healing experience. Why? Because I am upbeat and positive, and naturally the Universe would want to reward me for that, right? Wrong. A couple of days after this picture was taken, the “red sleeves” came on and the red bumps spread out to my back, butt, and legs. I was going backwards, not forwards.

I had been hoping that healing would be linear, that every day I would improve just a little. Wrong again. This going-backwards interlude ended with a serious crying jag because I hadn’t slept in days. Oddly, it seemed like my eyes would not actually produce tears. I’m hoping I was imagining that.

Fast forward to the end of week two. Better. Improving. Marginally. I slept through the night for the past two nights, one of them without ice packs. Massive victory! I’m drying up and shedding skin all over the place. My eyes and lips have little cuts all around them that make living unpleasant. And I generally feel gross and awful and like I still have the worse sunburn ever in the history of the world. But, I am trying to stay positive. I figure I’ve got nothing but my shiny attitude.

I haven’t left the house since this whole thing started except to go to the doctor. It’s August and bloody hot, so I’ve been hiding in the temperature-controlled basement. I’ve been fortunate enough to be able to work from home, thank goodness.

So, yes, I did have a “rebound” reaction after stopping the topical steroid I’d been using the past year (clobetasol). My face swelled up so badly that I went to the ER, where they put me on a course of prednisone for two weeks.

The bad news is that after I tapered off the prednisone last week, the face swelling and rash came raging back. I’ve been off the prednisone now four days. My eyes are so swollen that one of them actually sealed shut yesterday while taking a nap (has since re-opened, thankfully). My face is splotchy with red patches and I have a pretty bad rash across my neck and chest, inside my elbow folds, and on the backs of my hands. When I woke up today, I felt like the elbow folds and the backs of my hands, while still rashy, had improved. Progress!

Naturally, I spent all of Saturday reading up on topical steroid withdrawal. Horrifying! Apparently, this can take anywhere from six months to two years to clear up. Quelle horreur! In particular, I found the academic articles posted here on ITSAN (a nonprofit trying to raise awareness about topical steroid withdrawal) to be very useful. My inner scientist always loves a good peer-reviewed article.

I see the dermatologist tomorrow for a follow-up, so we’ll see what he has to say about my situation. I’d really like to stay off of the steroids at this point, but I’m guessing he’ll take one look at me and want to put me right back on them. However, I’ll give the guy a chance since he’s the one who told me about rebound reactions in the first place.

The good news is that there are a ton of blogs out there detailing people’s experiences with this condition. I appreciate this one, this one, and this one. After reading them, I feel like a pretty typical case: atopic dermatitis for years treated by stronger and stronger topical steroids. Turns out that will catch up with you eventually. Sadface. Literally.

I’m basically just trying to keep up my spirits while making a Plan. Sounds like this is going to be an uncomfortable ride to say the least. I’ve been hiding in my basement the entire weekend (too warm upstairs), sitting on the couch with ice packs on my face and neck. I’m definitely unfit for public viewing and moving around isn’t so easy. Oy!

I don’t have the guts to post a full picture of my face. Here’s a partial instead. Wish me luck is all I can say.

It’s been a very long time since I updated this blog, a year and a half. I blame a few things: the novel that I started during NaNaWriMo 2010 (and which is almost finished), the new job I got shortly thereafter (that I still have), and the once-a-week French night class (that I had to give up six months ago due to complete life-overwhelm). I suppose I just had other priorities. In any case, here I am, blogging again now.

I missed this blog! I miss blogging in general. Everyone should blog! What a great time capsule and scrapbook for myself, not to mention my own personal online cookbook. “Where’s my quince liqueur recipe? How did I make that winter slaw?” Answer: look on your blog.

I spent some time reminiscing here on my old blog this morning and I really enjoyed it. I’d like to post an update of the backyard, which looks very different from how it did here and here. And the front yard got a significant makeover as well. In addition, we remodeled our basement, building on the work we started here and here in our kitchen. Yay for home improvements.

On the health front, I’m sad to say that the SCD went by the wayside for me sometime in 2012-13. I was getting really healthy again, so naturally, I fell off the wagon. I was still gluten-free, but other very bad things, like sugar and GF grains, crept in. Two weeks ago, I endured a rebound reaction after stopping a topical steroid I’d been using the past year to control my rash, and I ended up in the ER with another round of prednisone. My face swelled up so much that I could hardly open my eyes and my skin was just ablaze. Painful, to say the least. Humbled, once again.

How many times will it take for me to understand that I can’t be a “normal” eater? That I’m not a person with a “normal” amount of environmental allergies, a “normal” gut, or a “normal” immune system? That I’m not a person with a reasonable case of atopic dermatitis, but instead a person with a very severe case of it. Well, I’m not sure yet. I’ve embraced the SCD once again and I’m really, really, really hoping that this third time will be the charm and I’ll be able to stick with it for years to come.

The SCD is the only thing I’ve tried in the past 16 years of dealing with this skin issue that has actually greatly improved it, that attempts to relieve the cause and not just mask the symptoms. I don’t use the word cure. But the SCD is the closest I’ve gotten to a cure for my rash. Also, please note, this is not a little rash, people. It’s a life-altering rash. If anyone says to me that I have a little rash, they can expect a fast, hard punch in the gut. You’ve been warned!

All kidding aside, I’m looking forward to several months from now when I’m hoping to feel better after eating right and taking good care of myself. Radical self care, which is part of how I think of the SCD, is a big challenge for me. But it’s what I need to keep practicing.

The upshot here is, of course, that I still love cooking and food. I always will. Cooking has been my longtime hobby and when I can turn around my poor-me attitude, I actually feel nicely challenged by the SCD way of approaching food. For that, I’m extremely grateful.

So, that’s the update. I’ll leave you with one of my favorite parts of Adrienne Rich’s “Diving into the Wreck”, which you should probably click-thru to read right now.

A new year, a new bloggy style pour moi! My old WordPress theme was getting rather stale to my eyes, and not in a good-old-crusty-bread kind of way. I’m hoping this new, very clean and crisp theme will encourage me to take and post more photos here. I sold my Nikon D40 last year in a stuff-purge and am now using only my iPhone for photography. There are so many interesting apps out there for modifying phone photos, so I should be able to get creative. Now, whether or not I actually post more photos is an entirely different matter.

But, oh, look! Here’s one now!

My view from the Sterling Room, where I sometimes write. This is my vote for the best view in Portland, Oregon.

Oh, and another!

The carpet in the Sterling Room, also the best in Portland. And do admire my new rain boots while you’re at it.

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About

Diagnosed with celiac disease (dermatitis herpetiformis) in 2004, I've been gluten-free since then. Because the GF diet hasn't seemed to work for me, I'm trying the Specific Carbohydrate Diet. No grains, no sugar, no potatoes, and limited dairy. Here's what I do eat.
If you're looking for my fiction and freelance writing, it's over here.
Name: Melanie Jennings
Location: Portland, OR, USA